friday

blood pooling is hard to explain, but along with the heaviness and purpleness sometimes I feel a burning throb like i just shut my thumb in a door, but its my legs. it's just all around uncomfortable and i find in different postitions it feels differents ways

Madeline

Do your legs feel tight, like they are swelling?

Mine do...I feel it as pressure mostly. like a swelling feeling.

If I stand still long enough, I would get all kinds of zips an zaps, pins an needles, pain. but I don't stand still for very long anymore.

Well, I did give some articles to my therapist on Monday. I told her that I when I talked about my health that found that some of her comments were not helpful and gave her some examples of this. She told me she knows that my symptoms were caused by my health, and that the only thing she found confusing was she couldn't tell whether the symptoms were caused by POTS or the medications I was talking. Funny, because I'm always saying this to her myself - that I hate taking BBs because they cause low BP and fatigue, the very things I'm trying to get away from. I'm not sure whether it matters why the symptoms are happening, since I don't have any choice but to take the BBs. So I didn't quite understand her point. She did seem happy to get the articles and thanked me for them both when I gave them to her and again at the end of the appointment.

So, all in all, I'm not sure what to make of her response - though she at least seemed receptive to reading the articles. We'll see what she says next week and how she reacts when I mention my symptoms from now on...

Glad to hear what happened. at least she accepted your criticisms ..although you seem to think she wasn't happy about the literature..she should be interested in reading it though being that she is talking to a person who has this problem. But like you said, see how she is after this...Good Going!

Susan

Susan,

If you are starting to feel well enough to do some small things, I think it is important to try and develop more strength and stamina. Easier said than done, but have you thought about physical therapy? I went through 3 months of it and it made a huge difference (until I had another setback) but now i know that I can get there again. Of course now I'm just trying to get back on my feet and the mere idea of going to therapy is exhausting! But I know I have to start doing it again otherwise I will lose more strength, etc.. Your physical therapist will be able to work with you to make sure you don't over do it - that you push just enough.

Could you talk to your doctor about prescribing you some? Or, could you join a gym that has free use of personal trainers? They may be able to help too but I would start with a physical therapist if you could.

Just a thought - I am happy that you are doing better!!!

Well, the thing is I'm on Medicaid. so the physical therapy they pay for isn't very helpful. I mean I went for fibromyalgia and it was basically once a week she would show me how to lift a box and stuff like that. It was 5 weeks of that. LOL I dno't know though it was a few years back. I was still working then..it might be worth trying again.

But I think I can try to do a little walking here and there. I was thinking instead of trying to walk in one direction I could walk one way for a few minutes then come back to the house and then if I feel good walk in another direction.. And just make sure I don't overdo it. I have a problem with that. I try to do too much when I feel good and then I feel bad..

thanks,

Susan

Well, I don't think your question is that difficult really. Many (if not most) of us can identify with the solitude of chronic illness. I know, for me personally, the internet has literally been a lifeline. Organizations such as DINET provide support for us- thankfully. Many of us who are unable to work have found other ways to be productive. Just by providing support to others with this illness- you are accomplishing something worthwhile.

As far as getting out and doing things- my personal mantra is "don't let what you can't do keep you from doing what you can do". I am unable to be the Master level Counselor I went to college to be but I AM a wife, mom, Girl Scout leader, Bible study leader, and professional songwriter. However, there are times, I am little more than a professional patient. And that's okay.

Give yourself permission to TRY. You may not be able to commit to anything on a regular basis- and that too, is okay. There are plenty of ways to be involved in society as you can and when you can. Also, be prepared for the worst case scenario. Always have a cell phone. gatorade (if this is part of your protocol) and health info cards with you. By being PREPARED you have control- instead of the fear of "what if" controlling you. If you have artistic talent and feel up to it- teach a class or two. Explain to your students about your situation and I bet you will find them to be understanding. You might even enlighten a few more folks about dysautonomia- and this is always a good thing.

Carmen

Y'know that's part of it right there. I feel like the 'what if" is controlling me. I have lot of good times but I'm afraid of the bad ones. Permission to try is a good point. I have a hard time when it comes to making plans with people because they get disappointed and then I feel guilty. I suppose that's something I have to learn not to do to myself

I do have the fear controlling me. it' s hard I've felt like I lost control a while ago.

I suppose there were times when I was feeling sick or faint and told people and they didn't respond well. One place was in a depression group ( which didn't really fit me but that's besides the point) and I felt so sick and wanted to lay down and they wouldn't' let me use a couch because it was not permitted to lay on the couches. So I had to wait for them to clear the room for me. I was so upset by this, I didn't go back... it was horrible sitting in that chair while feeling so sick and scared Especially when I knew if I laid down it would ease the symptoms right away. And worst of all I felt no one understood or maybe didn't even believe me.

I think now I would just say **** with it and say "I have to lay down and just lay on the couch" and just do it.

I guess that's part of taking control. I'm sick and I deserve the help I need.

I suppose years of doctors telling me it' s in your head or it' s not that bad and they had no clue what was wrong with me. I've had so many doctors, and just people dismiss my symptoms, and literally say ..well you just have to push yourself harder. Good idea then I'll actually pass out. maybe then you'll believe me.LOL I guess I'm afraid most o f the time that I won't find any support if I wind up sick out there. So, this is something I have to work on.

I was wondering myself if I might tell people I was teaching that I have this illness and I may not be able to show up every time. I am actually just thinking of doing this for free so it s not like they are paying costumers. To tell you the truth that would make me feel best. To have people know I am sick and accept me the way I am. Not expect me to do what they can.

I guess I have a hard time owning my illness. sometime I don't want people to think I'm a whiner or hypochondriac. And i try to be as little trouble as possible. Hurting myself in the process.

Thanks you for your help. I think I have some work to do on this but I like how you wrote about taking control. I would like to feel that way.

thanks again.=o)

Susan

I am not sure how to answer the question, but I wanted to let you know I was thinking of you! Hope thing will get better for you!

aw, thanks, that helps too.;o)

Susan

Hello,

I got all my neuro test results back. Everything was perfect, except that I have a slight calcium and vitamin D deficiency. The doctor suggested I try taking Effexor for my headaches, my symptoms and she said I did come out as slightly depressed. She is starting me on a half dose for seven days, then up to a full dose.

Now I am being referred to either the Mayo Clinic or Cleveland Clinic for possible autonomic nervous system dysfunction. Does anyone know how long these visits take? Will I be there overnight, or just for a day?

This is so frustrating.

Angela

A word of caution on Effexor. I was on it and another depression med..don't ask me why they gave me two at once. at this time I seeing a lot of specialists and was on a lot of pills. no one was really checking them all out and I foolishly trusted my doctors. anyway, after a night of being sick I wound up in the ER, my electrolytes had plummeted. I was half conscious when I got there,and was in for three days. the doctors there seemed to think the pills were the culprit. they took me off of everything! They told me that both antidepressants I was on could lower your salt level. the doctor there seemed to think since I already had a salt deficiency I shouldn't have been prescribed these meds. but of course most docs don't' know about pots and just assumed it was alright.

The thing is like I said it was two of these meds I was on not just Effexor.

But it does say on it's site that it can lower salt..so just be careful and aware. You may just need check on your sodium levels to see if it is effecting them and if it is you might be able to take them and just increase your salt intake, in my case I had no clue so I didn't . Plus it was dumb of them to put my on too similar meds. needless to say I'm very careful l with my meds and my doctors these days. I don't' trust anyone blindly anymore, and make sure everything from all docs that I see is going to my gp. then I double check it myself.

I almost feel like i'm asking a question know on will know how to answer but,

I am doing okay..but I am not well.

I havn' t really been on any meds lately. I've just been taking lot s and lots of salt. I am doing okay,.my Bp has gone up . used to be very low now , but now around 110 average. I don't faint or haven't had really really bad eps lately, no hospitals stays or anything.

But I would like to feel better. To do what the "normals' do. At last a little but, I still can't walk very far, and have to use a chair sometimes, and I can't really go too far from my home.

I can't do any kind of job or even volunteer job. It's a victory to be able to go out to the movies once in a while, Some days I'm able to do a little around the house and play frisbee with my dog outside but I just feel if I could be a little stronger if I could have a little more strength and could do a little more I would be happy.

I just spend too much time alone like this. the things is I'm mostly on my own. I do not have a husband or kids, the only friend I have is too far away to drive to most days, and he can' t drive here cause he doesn' t have a car. I live with two elderly parents. One of whom is sick and the other is busy taking care of him. So, my world is pretty small without being able to get out.

And to get out I need to be able to drive and to feel well enough to either walk a while or wheel my own chair.

I want to be able to join a class or something. but I can't afford to spend to money and then not be able to show up half the time. I have thought of staring a group of my own in the clubhouse we have here. Maybe teach people to paint. But again you can' t start a class if you don't know when you'll make it there and when you'll be sick.

Has anyone found anything particularly helpful that you felt gave you strength and stamina ..like I said my bp is already pretty good. So I don't know if meds like Florinef and things to raise the bp will do any good for me...But I want to feel better. any ideas?? Not just meds but anything that helps.

Susan

Procrit/Epogen/EPO injections twice a week- took me from fainting every day and always feeling tired, to working out at the gmy and fainting maybe twice a month now. Wonder drug. Although it contributed to significant weight gain- who cares about that when you get your life back, though?

This is the second answer that has Epogen listed. What kind of med is that?

Susan

tHOUGHT i WOULD CHIME IN THAT i AM SETUP TO GO FOR iv FLUIDS AS NEEDED..BIGGEST THING IS TO MAKE SURE THAT IT IS INFILTRATED OVER HOURS NOT A QUICK AMOUNT OF TIME..

SEEMS TO HELP ME A FEW DAYS AFTERWARDS..YET i STILL PEE MOST OF IT OUT THE FOLLOWING DAYS.

gOOD LUCK..

So, when you say as needed how often and why would that be.

I'm just wondering if is ever given to patients, say weekly to improve their POTS symptoms.. or is it just given in an emergency state.

In my case I have a lot of trouble going places because I don't know if I'll be able to get back. In other words I'll feel alright to drive but there' s no guarantees I'll be able to get back home...so needless to say, I don't get out much at all.

also when I do get out. I can't go many places.I sometimes get the strength up to go to the dollar store or drug store places like that. but sometimes I have to take a wheelchair. even then I have t o fell well enough to push myself around. And then well enough to get the chair back into the van... I haven't been to the mall in years.

I don't have anyone to drive me places really. and I don't have anyone to push me in a wheelchair , so I am really stuck.

I wish I could have just a little more strength and endurance.

I DO think it is all related.

I would recommend the MVP/S Survival Guide - I can't think of the author right this minute . .. I'll get it to you.

It is a great book and ties all these things together. I don't recall that there was great volumes of research proving anything, but the docs are tryingn to figure all this out.

This book was the #1 resource I was recommended at the MVP dysautonomia Center in Birmingham.

I felt much better after reading the book becaue it put all the symptoms together for the first time. Prior to reading this I felt I had all these sort of random illnesses. It was great to see that they are really all a part of one over-arching syndrome.

Good luck figuring all this out.

I am fairly new at all this as well. My diagnosis wasn't until this June. We are somewhat in the same boat! I was diagnosing myself prior to a doctor actually making the diagnosis. Everything from the above book just described my experiences so well.

I definitely think it' s all related. Thanks for the book info.

I cant see how I went from never being sick to having all these things pop up one after another.

I had a lot of that too. I found was figuring out stuff before the doctors and then presenting that to them. iT's frustrating but they just don't' have time to really look at unusual cases with the attention they deserve.

thanks, that helps a lot!

Just wondering if anyone is or has tried the IV saline treatment. I know it requires a trip to the docs office or hospital, and it 's probably not cheap but I thought some here may have tried it.

I was wondering if you did , how did it make you feel? Did it help? And if you are still doing it, How are you receiving treatment?

Going to your docs office? How often?

To all,

I've noticed looking at everyone's signatures that if you have POTS, you tend to have other problems, too. From what you've learned, do these other issues (irritable bowel, interstitial cystitis, polycystic ovaries) also have some relation to the autonomic nervous system? Have any of you asked your doctors about this?

Just a newly diagnosed POTS-y trying to sort everything out. Thanks.

Amy

I have P.O.T.S. C.F.S., I.B.S., P.C.O.S., Hypoglycemia, fibromyalgia, I had veeeery irregular and painful periods prior to having my ovaries removed, I also had anemia now being treated by iron pills, chronic sinusitis..im probably missing some.lol

But i really think there is a connection to all of this and my hormones.

I never had a problems with my health up up until about 8 years ago. Coincidentally this was the year my cycle changed from a normal 25 day cycle with a little PMS prior to bleeding for 5 days ,

To a 21 day , or 17 day, skipped a month, PMS from ****, 3 day, painful sort of a period.

Ever since then I have piling up more and more health problems.

Now it could be something else causing all of this I don't know. But it does seem that hormones have cause the most trouble for me. It has at the very least made things worse.

This is just me of course others might not have the same things going on.

This week I've been having pressure and heaviness in my chest. The best way to describe it is, it feels like something is sitting on my chest, and sometimes it's hard to breathe. this isn't a new symptom for me, it's just been worse this week. Usually when i get this, it just goes away and doesn't come back too often. But this week i've been getting it on and off since monday. I can barely do anything without feeling this heaviness in my chest. Yesterday i was folding my laundry and started to feel like that.

I've been in contact with my dr's office all this week. my cardiologist says i need to see him, but the earliest he can see me isn't till the 20th. So i guess my questions is for those of you who deal with pressure in your chest, how do you deal with it?? When it hits me, i usually try to rest, but that doesn't always help. I'm really hesistate about going to the er, cause they won't know what to do, and will end up sending me home. So i'll just be wasteing my time and end up more frustrated.

Today i've been okay, at least so far. So maybe it was just a bad week...who knows.

Just wondering if you have ever noticed excess gas with this feeling? I have times of pressure and difficulty breathing and a lot of the time I find I will have gas. Even if it is not noticeable at first, later on..there it is. So I usually take an antacid when I start to feel like that. May not be your problem, but thought I'd mention it as something to look for.

I find this link between hormones and POTS very interesting because I don't really think doctors who treat CFS and POTS don't necessarily look at the link between these two and women's hormonal shifts.

What I mean is I have seen a doctor for CFS and POTS treatment, and he's a good well known doctor, and yet, he says to go to a gyno for my hormonal problems ..yet the Gyno knows nothing of POTS.. They are both treating them as separate issues..

Doesn't it makes sense that the two should be looked at together? Especially since it the majority of CFS and POTS patients are women.

I feel like if the doctors that are studying POTS and CFS aren't including research into women's hormones they are missing part of the picture. I could be wrong there could be studies on this subject but I don't really see it. If anyone does see any studies like this please post a link to it.

Pots struck my when I was totally in menopause (estrogen level less than 10). I was only 42 (hysterectomy at 40, kept ovaries but the shut down). My dr thinks this was a factor. I am reading a great book on hormones called SCREAMING TO BE HEARD, by Elizaabeth lee Viliet. I recommend it.

Did you take any HRT's or estrogen replacement?

I've heard of the book . I will have to check the libraries for it.

Why are we screaming to be heard? And why are so few hearing us?? Why are sooo many women suffering with hormonal issues and doctors don't really know much about it.

I don't' know. I would say the dizziness might be a side effect of the pill but the low BP..makes me wonder. I'm going to see if I can find anything on Progesterone and blood volume etc.

I tried researching the topic. There appears to be a well documented link between progesterone and hypotension- a rare, but consistently reported side effect. Another side effect that is listed is: "dizziness." What is that? Another name for hypotension? Yep, I was dizzy because my BP was so dang low. I didn't find any info on progesterone and blood volume. Let me know if you find anything.

Julie

Okay I did a little searching last night and I did find quite a few places that said

" Estrogen enhances salt and water retention while progesterone is a natural diuretic".

quoted from: http://www.drlam.com/A3R_brief_in_doc_form...n_Dominance.cfm

and: http://lammd.com/A3R_brief_in_doc_format/p...e.cfm#Functions

So that would make sense that Progesterone could cause a low BP. If you lose salt, you're BP lowers.

I also found a few places that had something to say about the two them together:

"Elevated progesterone and estrogen levels cause blood volume and cardiac output to increase; as a result, pulmonary blood flow increases. ..."

quoted from: http://www.medscape.com/viewarticle/524442_5

"Elevated progesterone and estrogen levels cause blood volume and cardiac output to increase; as a result, pulmonary blood flow increases."

But many people praise estrogen's vascular benefits on the basis of tests showing increased blood velocity in large arteries such as the aorta, without evidence that more blood is being circulated. With aging, as arteries become constricted, increased blood velocity is taken as evidence of the pathology. Velocity measurements have to be interpreted in the contexts of tissue perfusion, cardiac output, etc. When the diameter of the artery is considered along with the velocity of the blood, the volume of flow can be determined, and then it appears that progesterone increases blood flow, while estrogen can decrease it. [Dickey and Hower, 1996.]

quoted from: http://raypeat.com/articles/aging/aging-es...gesterone.shtml

So I'm gonna have to read more on this blood flow stuff. there was also an article on how estrogen/Progesterone works on the stroke rate of the heart which effects the blood flow/volume.

I am not feeling well enough to absorb this stuff right now, and a lot of the papers that mention blow flow have a lot of medical jargon in them so I am really not up to that right now.

So maybe I will bring some to my CFS doc next time I see her and maybe she can make sense of it for me.

I know a lot of this stuff is not set in concrete. Just like some people are for HRT's and some against. It gets confusing.

But it does seem there are quite a few sites that say Estrogen enhances salt and water retention while progesterone is a natural diuretic..just as plainly as that.

Hope I didn't just confuse things more.

I definitely want to research this further though since I feel my periods were having a huge effect on how I felt.

Now after an oopherectomy ( removal of the ovaries) I am feeling better in that I don't have that horrible plunge every month. And I dont' have the horrible PMDD , and pain, but I feel just generally a bit weaker all through the whole month. So I'm considering if I should get Estrogen replacement therapy. My doctor had mentioned Progesterone and I think now in my case I have to be careful of that. might not be the best choice for someone with P.O.T.S.

It's difficult because most GYno's have no idea what P.O.T.S. is.

thanks for bringing up that reaction you had to the Progesterone.

Well , I think this is definitely something you need to address with your therapist. If you can't talk to her about what you're feeling,. what good does it do you?

You said it best to us right here..only say it to her, "when she (you) ask me whether I'm taking a good multi-vitamin, I feel like she (you) don't understand the severity of our fatigue."

"I feel like her(your)question implies that I'm worrying myself into a tachycardia spell, which isn't right and not what I need to hear. "

And you can bring some P.O.T.S. information to educate her. if she hasn't been exposed to any solid information about P.O.T.S. it might be why she just doesn't get it yet.

I am lucky to have a great therapist. And I had seen her prior to getting sick physically so she knows me pretty well. Yet sometimes she says things that make me feel as if she isn't getting that it's physical. I kind of understand since POTS Isn't a common illness. But even so, I think if I was Diabetic and had problems from that, she'd probably check out whet what I was feeling was coming from an emotional place sometimes, or if emotional stuff was worsening the symptoms. The thing is when I feel like she is not understanding it's physical, I have to tell her.

I feel that If she says anything, regardless of whether or not it has to do with my illness, that's making me feel bad or like she doesn't understand I need to tell her. That's part of our relationship.

You might want to ask her point blank as to whether she thinks that your emotions are the cause of your problems. Not in a nasty way but just to know exactly where she stands. Ask her if she understands how debilitating it is for you. Tell her It' s important that you know she believes you are physically ill, because you are. And you need the support any person with a physical illness would need.

If she doesn't get all of this and doesn't' like you telling her how it feels when she says certain things, she may not be the right therapist for you. I know I couldn't stand it if my therapist said something that bothered me and I couldn't' tell her about it. It's not always easy to get it out but I do it assertively, not blaming, just telling her how I feel. And I probably do this every week. LOL because I'm so sensitive. She understands that.

But try to talk it about with her. Give her some good info, especially stuff that describes how debilitating this illness can be. And if you do have symptoms that are easily presentable show them to her. If you have a heart rate that speeds up 20 to 30 beats immediately upon standing show that to her. If blood pools in your legs and they turn colors after few minutes of standing still, show that to her. I did that with my GP and it made an impression. He got that it wasn't in my head, when he could see my feet turning colors.

Good Luck

Hmmm. Interesting thread. As estrogen drops prior to our menses, progesterone increases, right? I have lots of abnormal bleeding due to a large fibroid and my gyne put me on an oral progesterone for 10 days prior to my scheduled period to normalize things. I took it right before bed, but still noticed that I was horribly dizzy- I couldn't even get up to use the bathroom after taking the pill. Lo and behold, I checked my BP and it was 71/42. Could progesterone have the exact opposite effect that estrogen does (decreasing blood volume)and that's the reason we feel worse before our periods?

Any thoughts? Anyone else have a hard time with progesterone?

Julie

I don't' know. I would say the dizziness might be a side effect of the pill but the low BP..makes me wonder. I'm going to see if I can find anything on Progesterone and blood volume etc.

Here's the problem: I've spent the past three years convinced that I'm crazy. Loony. A nut job. Now I've found out that a lot of what I experienced was entirely physiological, not simply psychological. But how do I change my view of myself from someone who's mentally ill to someone who has POTS?

Amy

Well I like your second choice e of words here better. "A person who is mentally ill". That does not mean crazy. There are plenty of people who have gone into a hospital for mental health issue and they are not crazy.

Even if you had emotional problems that produced physical symptoms, (which you don't ..you've been diagnosed with P.O.T.S.! )you would not be crazy or a nut job. And thinking that way just lowers your self esteem.

I understand what you are saying though. You are having trouble convincing yourself that this is real. That you really are sick.

I know I doubt myself sometimes because I had problems with depression and anxiety in the past, and even thought I felt better I still took an antidepressant. So as soon as a doctor would see I was on an antidepressant he would assume my physical symptoms were all in my head. I went through this for years. A lot of us have. I'm not even on those drugs now but still the docs always want to blame what they don't' understand on depression or anxiety.

Then I will question my symptoms. Am I having trouble breathing because of the POTS or anxiety? Now after years of therapy I know myself pretty well and I know the physical symptoms are not related to whether or not I'm anxious. . However years of other people telling me how I feel has messed with my head. it's hard not to doubt yourself.

Then you have well meaning people giving you advice when they don't' fully understand or fully believe, how sick you are.

Then I do a reality check. These people are functioning normally and talking about minor physical symptoms. I have had times when was so weak I couldn't get out of bed. I've been to the ER, in the hospital twice for three days. Would the hospital keep someone who wasn't sick in for three days? Noooo. And my Insurance wouldn't pay for it.! I have nights that I feel so sick , the kind of sick I wouldn't wish on my worst enemy.

I have to remind myself of this. I have to listen to the rational side of me. There is a part of me that knows exactly what is what. Everyone has that part. It's learning to listen to it that's difficult.

It's a process. Especially if you've gone through a few years of thinking it was all in your head. Some have mentioned cognitive therapy. And you say you have therapist so that's good. It might take time but you have to try to reframe your thoughts. first you have to be aware of your thoughts. that's

step one. Catch yourself when your hear the negative thoughts and try to remind yourself then of all of the evidence that points to your illness being physical.

There's a good book called "Feeling Good." it's meant for depression, but basically its a book on 'cognitive therapy".

It's a workbook too if you want to use it that way. it can be very helpful even if you are not in a depression, for straighting out those distorted thoughts.

I am having problems with hormones , and I was just reading about

the subject, and came across this sentence....."Estrogen can also promote sodium (salt) and water retention, increasing blood volume"

I was just wondering if anyone had their estrogen levels checked to see if they were low..possibly causing or adding to the low blood volume.

Or if possibly adding estrogen could help your blood volume?

it's just a shot in the dark but I just saw that it can help with retaining salt and water and was wondering if this information could be of any benefit. i realize hormones are not to be played around with but the connection to blood volume got me, and I recall some women her saying they got POTS after Menopause which would effect the estrogen levels.

I was wondering if there is any new information about POTS symptoms from Dr. Bell's studies on CFS. Last I heard he was doing studies on the blood volume and I was wondering if there was any useful information that this had turned up in regards to treatment for POTS patients. I had heard a while ago that he was doing studies about treating people with an IV saline solution, and was wondering if this was really helpful. although i guess my insurance wouldn't want to pay for it, i would still be interested in hearing if this has helped people.

thanks to all who answered.

I find this helpful. at least I know that there does seem to be a connection. See I was asking the wrong people..doctors.;p

anyway, it's interesting how some of you mentioned that you have gas prior to the episode. i always thought of it coming from the episode but now I'm wondering if there might be a GI problem proceeding the event. I've never noticed it but I now i will be aware of it and see if i might have had signs prior to an episode.(sorry don't know what else to call it.)

I'm wondering if any doctors that do studies like Dr. Bell have looked at this issue.

thanks again All.

susan

I noticed that when i have a really bad time with POTS when I feel like fainting or weak etc after walking . Almost every time afterwards or even during I get bad gas.

It seem to build up in my limbs as I am walking..I get that feeling of bloatedness or pressure. Or sometimes later on . I'll just get very bad gas and it will continue through the night.

Now I told the doc about this but not being a POTS doc he couldn't see that gas could be caused by waking. Usually it is relieved by walking..

He's looking at it as a gas problem but i'm wondering if the gas ins the result of something else that is happening when I walk. Whatever is happening to produce the POTS symptoms .

I was just wondering if anyone else has noticed this. Having a bad gastrointestinal feeling after a bad POTS day..or even if you've noticed a feeling of bloating or fullness and pressure in the limbs...seems like there is definitely a connection in my case and i' just trying to find out why.

Well one good thing is the link to CFS. They have started a CFS Awareness campain. I just saw a brief spot about it on the news. I heard they are supposed to have a full page ad in People mag. this month.

They have done reasearch in the name of CFS on symptoms that are POTS related, like orthostatic hypotension, so maybe POTS will be mentioned more often if CFS gets more attention.

babu.